Director, National Prion Disease Pathology Surveillance Center, Case Western Reserve U School of Medicine, Cleveland, OH

Brian Appleby, MD, is a neuropsychiatrist who treats and researches cognitive disorders. His clinical and research interests include prion diseases (e.g., Creutzfeldt-Jakob disease), frontotemporal lobar degeneration, and young-onset dementias. 

Dr. Appleby received a B.A. in biology and philosophy from Goucher College and an M.D. from Georgetown University School of Medicine.  He completed a psychiatry residency at The Johns Hopkins Hospital, where he also completed a geriatric psychiatry fellowship. 

Dr. Appleby is professor of neurology, psychiatry, and pathology at Case Western Reserve University and University Hospitals Cleveland Medical Center.  He is Director of the National Prion Disease Pathology Surveillance Center Director and Medical Director of the Creutzfeldt-Jakob Disease (CJD) Foundation. He is also chair of the Cleveland Chapter Alzheimer's Association Professional Advisory Board.  He is Leader of the Cleveland Alzheimer’s Disease Research Center’s Clinical Core and Co-Leader of its Neuropathology Core. 

Project/Product Manager, Research and Development Division, International Clinical Development Department, Nobelpharma Co., Ltd., Tôkyô, Japan

Kiyoshi Arita, MSc has about 30 years of experience for the clinical research/development at Japanese Pharmaceutical company (including subsidiary located in London and in New Jersey) and at joint venture company in Quebec.

He worked for global clinical development of Phase I to III studies with several therapeutic area, such as CNS, renal disease and vaccine.

Currently he has been working at Nobelpharma Co., Inc. since 2022 as a Project Manager for project targeting with Prion Disease.

Michael Geschwind, MD, PhD, Professor of Neurology, UCSF Weill Institute for Neurosciences and Clinician-Researcher, UCSF Edward and Pearl Fein Memory and Aging Center

Michael Geschwind, MD, PhD, is a professor of neurology at the UCSF Weill Institute for Neurosciences and a clinician-researcher at the UCSF Edward and Pearl Fein Memory and Aging Center. Dr. Geschwind specializes in the evaluation, management, and treatment of rapidly progressive dementias, movement disorders, and neurogenetic conditions.

Dr. Geschwind earned his MD and PhD in neuroscience through the NIH-sponsored Medical Scientist Training Program at Albert Einstein College of Medicine in New York. He completed his internship in internal medicine at UCLA Medical Center, followed by a residency in neurology at Johns Hopkins University School of Medicine. He then pursued a fellowship in behavioral neurology at UCSF, where he has remained a vital part of the Fein Memory and Aging Center team.

Dr. Geschwind is widely recognized for his expertise in rapidly progressive dementias, including prion diseases such as Creutzfeldt-Jakob disease (CJD) and antibody-mediated encephalopathies. He helped establish the first U.S. program dedicated to assessing rapidly progressive dementias at UCSF and led the country’s first treatment study for CJD. He also has active research and clinical interests in movement disorders, such as Huntington’s disease, spinocerebellar ataxia (SCA), corticobasal degeneration (CBD), progressive supranuclear palsy (PSP), and multiple system atrophy (MSA), as well as neurogenetic disorders like CADASIL (cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy).

Dr. Geschwind co-directs the UCSF Huntington’s Disease (HD) Center, designated as a Huntington’s Disease Society of America Center of Excellence, and serves as an investigator for studies on Huntington’s disease, SCA, and MSA. He also co-directs the UCSF Autoimmune Encephalopathy Clinic, where patients with antibody-mediated encephalopathies are assessed and treated.

An accomplished teacher and mentor, Dr. Geschwind is deeply involved in the training of medical students, residents, and fellows at UCSF. He lectures nationally and internationally on dementia and movement disorders, making significant contributions to the field through his teaching, research, and clinical care.

Professor of Neurology, Director, Center for Comprehensive Care and Research on Memory Disorders, University of Chicago

Dr. Mastrianni earned his Ph.D. in pharmacology at the University of North Carolina and his M.D. at McGill University. He completed his internship and residency training in neurology at the University of Pennsylvania. After his clinical training, he returned to the lab to carry out a Howard Hughes Medical Institute supported postdoctoral research fellowship at UCSF, where he studied the molecular genetics of prion disease in the laboratory of Dr. Stanley Prusiner.  He is the Chairman of the Data and Safety Monitoring Board for the Ionis ION717 Prion Disease Clinical Trial.

Currently, he is a Professor of Neurology and Director of the Center for Comprehensive Care and Research on Memory Disorders at the University of Chicago and Director of the Behavioral Neurology and Neuropsychiatry program. He and his multidisciplinary clinical team diagnose and treat a variety of cognitive disorders. Of special clinical focus are the prion diseases, which are neurodegenerative diseases that are also transmissible. These rare, but devastating diseases are also the target of Dr. Mastrianni’s research program, which ranges from genotype-phenotype correlations of human disease to molecular studies designed to better understand the nature of prion propagation with a goal to develop therapies for prion disease.

Dr. Mastrianni’s studies have led to the recognition of several genetic variants of prion disease, and the first description of Sporadic Fatal Insomnia, a rare subtype of prion disease that helped to establish the importance of the conformational subtype of misfolded prion protein as the driver of the clinical phenotype of disease. He has a robust record of publications and research funding and is the recipient of several honors and awards, most notably the Frederic A. Gibbs Discovery Award for Scientific Achievement from the Brain Research Foundation. He has served as a consultant to the FDA, the Alzheimer’s Association, the ECRI institute, and the Federal Trade Commission, among many others. Finally, Dr. Mastrianni is a committed teacher to undergraduate, graduate, and medical students, in addition to residents and fellows from a variety of specialties.

Director, Prion Therapeutic Science, Broad Institute of MIT and Harvard,Cambridge, MA

Grey Genetics

Krista Savage, MS, CGC is a genetic counselor with over ten years of clinical experience in neurogenetics across multiple settings. She has worked with many individuals and families with neurodegenerative conditions, including prion disease, dementia, ALS, and Parkinson’s disease. Her experience includes working as a clinical
and research genetic counselor in an academic medical center and providing telehealth genetic counseling services across multiple platforms. Krista received her M.S. degree in Genetic Counseling from the University of Cincinnati in 2014. She is an active member of the National Society of Genetic Counselors and the Neurogenetics Special Interest Group.

Family Member

The book, “Mercies in Disguise: A Story of Hope. A Family’s Genetic Destiny, and The Science That Rescued Them” tells the story of CJDF Board Member Amanda Kalinsky and her family, the path to diagnosing the disease (GSS) that affects multiple family members, and how Amanda changed the future of prion disease in her family.

Chair, CJD Support Network, UK

Professor Richard Knight received his BA degree in philosophy, politics, and economics at Oxford
University in 1972, his medical degree in 1977, his postgraduate medical qualification in 1980 and
became a Fellow of the Royal College of Physicians of Edinburgh in 1993.

Professor Knight an Emeritus Professor in the University of Edinburgh and an Honorary Clinical Neurologist at the Royal Infirmary of Edinburgh, NHS Lothian University Hospitals Trust. He worked in the UK National CJD Research and Surveillance Unit until its closure in March 2025. Since then he has run a UK National CJD Diagnostic Advisory Service. He is currently the Chair of the UK National CJD Support Network, a Director of the CJD International Support Alliance, an International Champion of the Australian CJD Support Group, and a Member of the Scientific Advisory Committee of the USA CJD Foundation.

Professor Knight has authored and co-authored many CJD related papers related to sporadic, variant,
genetic and iatrogenic forms of illness. His main research interests have centered on epidemiology,
clinical features and diagnosis of prion disease.

Autopsy Specialist, National Prion Disease Pathology Surveillance Center  

Meghan Lewis is an autopsy coordinator at the National Prion Disease Pathology Surveillance Center, where she has been supporting families for nearly eight years. She also coordinates autopsies for the Cleveland Alzheimer’s Disease Research Center. With a master’s degree in clinical psychology, Meghan brings both clinical insight and compassion to her work, helping guide families through the often difficult and emotional process of coordinating an autopsy.

Meghan is deeply committed to making sure families feel supported, informed, and cared for throughout the process. She is honored to be part of teams dedicated not only to advancing research on neurodegenerative diseases, but also to walking alongside families with empathy and understanding. Outside of work, she enjoys spending time with her two kids, music, and reading.

Senior Epidemiologist and Deputy Chief of the Prion and Public Health Office at the United States Centers for Disease Control and Prevention (CDC)

Ryan Maddox is a senior epidemiologist and Team Lead of the Prion and Public Health Office at the United States Centers for Disease Control and Prevention (CDC). In this role, he coordinates national surveillance of human prion diseases such as Creutzfeldt-Jakob disease. Dr. Maddox received his Bachelor of Science degree from Auburn University and earned his Master of Public Health (epidemiology) and PhD degrees from Emory University. He is the author or co-author of many publications covering various aspects of prion diseases in the United States.

Executive Medical Director, Regeneron, Tarrytown, NY

Andreja Avbersek is a board-certified neurologist and Executive Medical Director at Regeneron, with over a decade of experience in translational and early drug development for neurodegenerative diseases. Combining her expertise in neurology and genetics, she has been instrumental in advancing RNA interference therapies for central nervous system disorders into clinical testing.

Dr. Avbersek’s career is driven by a commitment to improving the lives of patients with severe neurological conditions through cutting-edge science and collaborative innovation.

Autopsy Program Manager, National Prion Disease Pathology Surveillance Center (NPDPSC)

Danielle Jordan has been with the National Prion Disease Pathology Surveillance Center (NPDPSC) for
over twenty years and has risen through the ranks of Technician and Assistant Tissue Coordinator. She
continued her growth with the Center and became an Autopsy Case Coordinator, a position she held for
over a decade. During this time, she received her certification as a Grief Counselor as well as studying
psychology at Case Western Reserve University. Due to her diligence and dedication to serving the
NPDPSC and families, she was promoted to the Autopsy Program Manager where she collaborates with
the CJD Foundation, implements surveillance objectives mandated by the Centers for Disease Control
and Prevention (CDC) along with partnering with mortuary professionals and local/state Departments of
Health to expand regional autopsy sites throughout the United States.

Throughout her career, Ms. Jordan has served countless families grieving the loss of a loved one and in
2022 she created a social work internship program with the Jack, Joseph and Morton Mandel School of
Applied Social Sciences at Case Western Reserve University and holds the role of Field Instructor. She
continues to serve with professionalism and empathy in order to best serve families, physicians and
mortuaries as well as the purpose of the NPDPSC.

Rob Pulido is Director of Clinical Development at Ionis Pharmaceuticals where he has spent the past
seven years advancing novel RNA therapeutics for neurological diseases. In this role, he leads the team
developing and testing investigational treatments for neurodegenerative diseases including prion
disease. In this capacity, he is responsible for development strategy of these clinical programs and
partnering with key stakeholders to design and execute clinical trials. He has also worked in close
collaboration with physicians and scientists in the prion field to shape foundational science and evidence
generation to help advance clinical development of PrP-lowering therapies.

Dr. Pulido received his bachelor’s degree in Neuroscience from Boston University and his PhD degree in
Biological Sciences with a specialization in Neurobiology and Pharmacology from the University of
California San Diego.

Certified Dementia Practitioner, Certified Grief Educator, The Memory Center, University of Chicago Medicine, Chicago, IL

Tessa brings over 20 years working with diverse populations in the nonprofit and medical sectors, from youth and parents, to women in maternal health, and older adults, doing her best to listen first before giving care. Currently approaching her 10th year at UChicago Medicine, she is interested in providing patients, care partners, and families — across intergenerational lines and identities — with personalized access to resources, short- and long-term care planning, and exploring creative strategies together for increased quality of life.  Tessa primarily supports all of those that come through The Memory Center, with Alzheimer’s Disease and other related dementias (ADRDs). She also provides support via consultation for all of the outpatient neurology and neurosurgery clinics, which includes patients with ALS, epilepsy, stroke, and more.

On her off time, Tessa serves as a co-founding board member at Lorenzo’s House, a local nonprofit focusing on younger onset dementia – those diagnosed under age 65, with children as young as 3 yrs old to age 35+. She helps to design their support programs and facilitate the youth and adult care partner sessions and grief spaces worldwide, currently reaching 49 states and 17 countries. As we know, many of those with CJD are often coming from younger families, and Tessa is all too familiar with its uniquely complex challenges. 

As a graduate student recipient of the Albert T. Schweitzer Fellowship, she focused on bringing grief and loss support to local communities, along with cultural humility and compassionate care to medical settings, and continues to do so through speaking engagements for medical professionals, graduate students, and community members.  

Tessa is co-founder and medical sector co-lead for Dementia Friendly Hyde Park, and is a board member with the Society for Social Work Leadership in Healthcare. She works behind the scenes of the innovative and nationally award-winning programs at The Memory Center, holds a certification from the National Council of Certified Dementia Practitioners, and is a Certified Grief Educator. Tessa completed her B.A. in Sociology at The University of Notre Dame and a masters in clinical social work at The University of Chicago School of Social Service Administration.

Vice President of Translational Sciences, Gate Bioscience

Nina Oberbeck, PhD, is the Vice President of Translational Sciences at Gate Bioscience, where she leads the Prion program. Gate Bioscience have been collaborating with the Vallabh Minikel Lab since 2021.

Dr. Oberbeck earned her Ph.D. in Molecular Biology from the MRC Laboratory of Molecular Biology, University of Cambridge, where she investigated DNA repair mechanisms under the mentorship of Dr. K.J. Patel, FRS FMedSci. She also holds an MA (Hons) and MSci in Natural Sciences from Magdalene College, University of Cambridge. She completed her postdoctoral training at Genentech Inc. under Dr. Vishva Dixit, focusing on the signaling pathways that regulate epidermal stem cell differentiation. She has authored several first-author publications in leading scientific journals, including Nature and Molecular Cell.

Dr. Oberbeck has presented Gate’s work on prion disease internationally at the Prion 2024 meeting in Nanchang, China, and the 14 th Annual National CJD Conference in Melbourne, Australia, in 2023.

Associate Professor, Department of Biochemistry, University of Toronto, Toronto, Ontario, Canada

Dr. Watts obtained his PhD in Laboratory Medicine and Pathobiology from the University of Toronto and then conducted postdoctoral research in the lab of Stanley Prusiner at the University of California San Francisco. He is currently a Principal Investigator at the Tanz Centre for Research in Neurodegenerative Diseases, an Associate Professor within the Department of Biochemistry at the University of Toronto, and is the Canada
Research Chair in Protein Misfolding Disorders. His research interests include studying the role of protein aggregate strains in Alzheimer’s disease and Parkinson’s disease as well as exploiting the unique properties of the bank vole prion protein to understand how prions form spontaneously in the brain.

Postdoctoral Fellow, Prion Research Center, Colorado State University

Grant Title: "Refined transgenetic approaches to investigate selective adaptation of human prions

during intracranial and peripheral transmissions”

Alyssa Block, PhD is a postdoctoral fellow within the Prion Research Center at Colorado State
University. Dr. Block earned her Ph.D. at Creighton University in Omaha, Nebraska where she studied
transmission, adaptation, and strain emergence of synthetic prions in hamsters. Dr. Block investigates
the strain diversity of emergent Nordic chronic wasting disease and development of improved human
prion disease animal models.

Department of Medicine and Surgery, University Kore of Enna, Italy; Adjunct Assistant Professor in the Department of Pathology, at Case Western Reserve University (CWRU); Associate Director at National Prion Disease Pathology Surveillance Center (NPDPSC), Cleveland, OH 

Grant Title: "Investigating prion protein seeding activity in non-prion disease dementia "

Dr. Ignazio Cali received his doctoral degree (Ph.D.) from the University of Campania “Luigi Vanvitelli.” In 2015 he carried out his thesis work at Case Western Reserve University. Currently, Dr. Cali is an Associate Professor at University Kore of Enna and Associate Director of the National Prion Disease Pathology Surveillance Center (NPDPSC). His main research interests focus on understanding the molecular basis of phenotypic expression in comorbid neurodegenerative diseases, such as prion diseases and Alzheimer’s disease or prion diseases and chronic traumatic encephalopathy. This research aims at investigating the reciprocal impact that the two or more pathological proteins have on each other, and the pathological consequences of the interactions between different pathogenic proteins. Dr. Cali has published nearly 50 articles on human prion diseases, and animal models of the disease.

Boston University Chobanian & Avedisian School of Medicine

Grant Title: "Characterization of synaptic abnormalities in iPSC-derived neurons from E200K carriers"

Dr. Alepuz Guillen completed his PhD under the supervision of Prof. Andrew B. Tobin and Prof. Graeme Milligan at the University of Glasgow, investigating the role of muscarinic acetylcholine receptors in misfolded prion propagation. Since 2024, he has been part of Dr. David A. Harris’ laboratory at the Boston University Chobanian & Avedisian School of Medicine. As a Postdoctoral Associate, his work focuses on the E200K PrP mutation utilizing neurons derived from mice and humans.

PhD Student, Department of Infectious Disease, Imperial College London

Grant Title: “Engineering human cells to propagate fluorescent prions for live monitoring of prion infection and high-resolution in situ prion structure determination”

Ellie Hanzi is a first year PhD student in the Department of Infectious Disease at Imperial College London, working in the laboratory of Dr. S. Manka. She graduated with First Class Honours in Biochemistry from the University of Sheffield, where she completed her integrated master’s degree. Ellie’s research focuses on developing a live-cell imaging platform to track prion protein misfolding in real time and identify key molecular interactors at the single-molecule level. She also aims to define high-resolution structures of complex prion assemblies directly in infected cells (in situ) using cryo-correlated light and electron microscopy (cryo-CLEM), with the goal of uncovering potentially druggable interfaces.

Department of Optometry and Vision Sciences, The University of Melbourne

Grant Title: “Assessing retinal function as a potential early biomarker for Creutzfeldt-Jakob Disease (CJD)”

Pei Ying Lee completed her Bachelor of Optometry and PhD in visual neuroscience at the University of Melbourne. She is an early career postdoctoral researcher at the University of Melbourne, working on eye biomarkers in neurodegenerative conditions such as Parkinson’s disease and prion disease.

Imperial College London, Faculty of Medicine, Department of Infectious Disease,
Synthetic and Structural Biology Section

Grant Title: “Engineering human cells to propagate fluorescent prions for live monitoring of prion infection and high-resolution in situ prion structure determination”

Dr Szymon W. Manka is an expert in cryogenic electron microscopy and advanced image processing algorithms for 3D reconstruction of macromolecular structures at near-atomic resolution. He recently introduced genetic code expansion and bioorthogonal labelling techniques to develop and expand the structural cell biology toolbox for prion research. Szymon leads a prion research lab at Imperial College London. His current research is funded by the UK Medical Research Council and the CJD Foundation.

Vice President of Translational Sciences, Gate Bioscience

Grant Title: “Assessing efficacy of a PrP-lowering Molecular Gate as a therapeutic for prion disease”

Nina Oberbeck, PhD, is the Vice President of Translational Sciences at Gate Bioscience, where she leads the Prion program. Gate Bioscience have been collaborating with the Vallabh Minikel Lab since 2021.

Dr Oberbeck earned her Ph.D. in Molecular Biology from the MRC Laboratory of Molecular Biology, University of Cambridge, where she investigated DNA repair mechanisms under the mentorship of Dr. K.J. Patel, FRS FMedSci. She also holds an MA (Hons) and MSci in Natural Sciences from Magdalene College, University of Cambridge. She completed her postdoctoral training at Genentech Inc. under Dr. Vishva Dixit, focusing on the signaling pathways that regulate epidermal stem cell differentiation. She has authored several first-author publications in leading scientific journals, including Nature and Molecular Cell.

Dr. Oberbeck has presented Gate’s work on prion disease internationally at the Prion 2024 meeting in Nanchang, China, and the 14 th Annual National CJD Conference in Melbourne, Australia, in 2023.

Rocky Mountain Laboratories, NIAID, NIH 

Grant Title: “Higher-resolution visualization of prion fibrils in neurons and extracellular vesicles using state-of-the-art Cryo-TEM and FIB-SEM imaging”

Jakub earned his M.Sc. in Virology before pursuing a Ph.D. in prion research at Charles University in Prague, Czechia. Following his Ph.D., he joined Byron Caughey’s lab at Rocky Mountain Laboratories as an early-career researcher. His work focuses on prion- containing extracellular vesicles and the pathophysiology of prion-infected cells. Jakub's expertise lies in advanced electron and light microscopy, as well as flow cytometry.

Tanz Centre for Research in Neurodegenerative Diseases and Department of Biochemistry, University of Toronto

Grant Title: “Engineered biosensors for improved prion detection”

Dr. Watts obtained his PhD in Laboratory Medicine and Pathobiology from the University of Toronto and then conducted postdoctoral research in the lab of Stanley Prusiner at the University of California San Francisco. He is currently a Principal Investigator at the Tanz Centre for Research in Neurodegenerative Diseases, an Associate Professor within the Department of Biochemistry at the University of Toronto, and is the Canada Research Chair in Protein Misfolding Disorders. His research interests include studying the role of protein aggregate strains in Alzheimer’s disease and Parkinson’s disease as well as exploiting the unique properties of the bank vole prion protein to understand how prions form spontaneously in the brain.

Department of Neuroscience, Biomedicine and Movement Sciences, University of Verona, Verona, Italy

Grant Title: “Multi-center assessment of olfactory swab procedure performed by non-otolaryngologists for improving and simplifying human prion disease diagnosis”

Gianluigi Zanusso is an associate professor of neurology at the University of Verona, working in the Department of Neuroscience, Biomedicine and Movement Sciences. He received his PhD in Neuroscience from the University of Verona in 2000, and subsequently trained in medicine and surgery, specializing in neurology. Prof. Zanusso has extensive experience in studying the clinical, neuropathological, and biochemical aspects of prion disorders and other neurodegenerative disorders.

The main focus of his research has been the involvement of the olfactory system in neurodegeneration. He developed a sensitive and highly accurate test for diagnosing Creutzfeldt-Jakob disease using nasal swab samples. His laboratory is currently adapting this approach for use in detecting pathological misfolded proteins in other neurodegenerative diseases, including Parkinson’s disease, dementia with Lewy bodies, multiple system atrophy, and idiopathic REM sleep behavior disorder. Dr Zanusso is a member of the Neuroprion Association and actively involved in human prion disease surveillance.

President and Executive Director, CJD Foundation

Debbie Yobs joined the CJD Foundation (CJDF) in 2014 and became President and Executive Director in January 2015.  Previously, she was a member of the CJD Foundation Board of Directors and co-Chair of the CJD Foundation Fundraising Committee.

Today, Debbie directs the daily activities of the CJD Foundation, working with staff and volunteers on programs including advocacy, awareness, medical education, annual conference, and research grant management.  She assists families through the CJDF HelpLine and conducts support groups and family workshops.  She has also continued to passionately support the fundraising efforts of the CJD Foundation.

Through presentations at the international Prion scientific conferences, Debbie has represented the families of the CJD Foundation and drawn the attention of hundreds of scientists to the CJDF’s research grant program. She is a member of the CJD International Support Alliance. In addition, she is a member of the National Prion Disease Pathology Surveillance Center (NPDPSC) Advisory Board.

Before joining the CJD Foundation, Debbie served as Marketing Director at leading professional services firms. She earned a bachelor’s degree in communications from Miami University, Oxford, Ohio, and completed professional development courses at New York University and University of Michigan. She also completed a course in Professional Patient Advocacy in Life Sciences (PPALS).

Program Director, CJD Foundation

As Program Director of the CJD Foundation, Lori leads the administrative operations of the Akron office, coordinating day-to-day activities. She supports families through the HelpLine, facilitates family workshops, organizes grand rounds through the CJD Foundation Medical Education Program, and supports the advocacy program and funeral education program. Lori co-manages the CJD Foundation annual conference, including the agenda, venue, registration, media, and logistics processes. She also works with families on family fundraisers, Strides for CJD, and research grant programs.

Lori has represented the CJD Foundation at the International Prion 2012 (Netherlands), Prion 2015 (Colorado), Prion 2017 (Edinburgh), and Prion 2018 (Santiago de Compostela) conferences.  She is a member of the CJD International Support Alliance, which collaborates to refer families to experts and resources in the member countries, and to raise awareness worldwide.

Lori joined the Creutzfeldt-Jakob Disease Foundation (CJDF) in 2010.  Previously, she was Program Director for Older Adults at the Shaw JCC in Akron, Ohio. Before moving to Akron, Lori worked at Carnegie Mellon University in her hometown of Pittsburgh.